Pappot Helle, Meier Sara Kaa, Hjerming Maiken, Piil Karin, Hanghøj Signe
Department of Oncology, Rigshospitalet, University Hospital of Copenhagen, Blegdamsvej 9, 2100, Copenhagen, Denmark.
User of AYA Support Facility 'Kræftværket', Rigshospitalet, University Hospital of Copenhagen, Copenhagen, Denmark.
Res Involv Engagem. 2023 Jul 21;9(1):56. doi: 10.1186/s40900-023-00464-z.
The purpose of this case study is to describe how a vulnerable group of patients can be included in research. The activities, challenges, lessons learned, and reflections on the importance of patient involvement in research for 5 years (2016-2021) at the adolescent and young adult (AYA) cancer support facility, Kræftværket, are reported.
A patient panel at Kræftværket, the Youth Panel has multiple aims, one of which is the ability to perform patient involvement in research, with the goal of achieving research of high quality. We here describe how Patient and Public involvement (PPI) can be customized to AYAs in a cancer trajectory, who face many challenges, including those in the physical, psychological, and social domains. During 2016-2021, Youth Panel meetings were planned every third month but interrupted during the COVID-19 pandemic. With a flexible structure and a dynamic panel including 10-15 varying AYAs in a cancer trajectory, engagement and involvement have been maintained. Eight research topics were investigated, seven of which were discussed and confirmed to be important by the Youth Panel. Out of eight topics, three were raised by patients, and five by researchers. One was not discussed due to COVID-19. Some of the challenges we have experienced were related to the flexible meeting structure and the differing expectations and priorities as well as the impact of COVID-19. However, we experienced that patient involvement is possible in the field of AYA oncology if a trusting environment is created. A key finding in our case study was, that without a national Danish PPI program and no defined international standard for PPI in AYA cancer research yet, we were able to give patients the possibility to give input to researchers on topics where research is missing.
Here, we demonstrate how patient involvement in research has been performed at an AYA cancer facility, Kræftværket, during a 5-year period. We encourage others to perform patient-involving research, even in challenging populations. Ideally this must follow international standards for PPI in AYA cancer research when such exist to improve research with crucial insight from patients.
本案例研究的目的是描述如何将弱势群体患者纳入研究。报告了在青少年和青年成人（AYA）癌症支持机构Kræftværket开展的活动、面临的挑战、汲取的经验教训以及对患者参与研究重要性的思考（2016 - 2021年，为期5年）。
Kræftværket的患者小组——青年小组有多个目标，其中之一是具备让患者参与研究的能力，目标是实现高质量研究。我们在此描述如何针对处于癌症病程中的AYA人群对患者及公众参与（PPI）进行定制，这些人群面临诸多挑战，包括身体、心理和社会领域的挑战。在2016 - 2021年期间，青年小组会议原计划每三个月举行一次，但在新冠疫情期间中断。通过灵活的架构以及一个动态的小组，其中包括10 - 15名处于癌症病程中的不同AYA人群，参与度得以维持。研究了八个研究主题，其中七个经青年小组讨论并确认为重要主题。在这八个主题中，三个由患者提出，五个由研究人员提出。有一个主题因新冠疫情未进行讨论。我们遇到的一些挑战与灵活的会议架构、不同的期望和优先事项以及新冠疫情的影响有关。然而，我们体验到，如果营造一个信任的环境，在AYA肿瘤学领域患者参与研究是可行的。我们案例研究的一个关键发现是，在丹麦尚无全国性PPI项目且AYA癌症研究中也没有明确的国际PPI标准的情况下，我们能够让患者有机会就研究缺失的主题向研究人员提供意见。
在此，我们展示了在5年期间，Kræftværket这家AYA癌症机构是如何开展患者参与研究的。我们鼓励其他人开展患者参与的研究，即使是针对具有挑战性的人群。理想情况下，当存在AYA癌症研究中PPI的国际标准时，这必须遵循这些标准，以便从患者的关键见解中改进研究。
